Agreement Between Self-Reported and Proxy-Reported Pain in Veterans With Advanced Heart Failure

BackgroundSelf-reported pain is frequently reported among patients with advanced heart failure (aHF). Agreement between patients' pain assessment and their proxies have shown inconsistent results. We examined agreement between documented patient self-report and family-reported pain scores for Veterans with aHF towards the end of life (EOL).MethodsWe conducted a retrospective cohort study of aHF patients who died between 2018-2020 while inpatient at one of 83 Veterans Affairs Medical Centers (VAMC) and whose families completed a Beavered Family Survey (BFS) (n = 1045). BFS is a nationally distributed questionnaire assessing family-reported quality of inpatient EOL care at VAMCs. Averaged daily patient-reported numeric rating scale (NRS) pain scores over the last 30 and 7-days of life were categorized as: no pain (NRS = 0), mild (NRS = 1-3), moderate (NRS = 4-6), and severe (NRS = 7-10). NRS categories were compared to family-reported pain using responses to two BFS items (ever pain; some pain). Agreement between NRS categories and family-reported pain was assessed using Cohen's kappa coefficient statistic.ResultsThere was moderate agreement between 30-day NRS severe pain and BFS ever pain and fair agreement for the last 7 days. Mild pain showed no-to-slight agreement compared to both BFS pain outcomes. Substantial or complete agreement was not identified between NRS and BFS. Agreement was generally stronger for last 30 vs 7 days of life.ConclusionsAgreement between aHF patients' and their families' pain reporting was moderate for the worst pain categories only and stronger with longer time for patient-reported pain. These findings suggest limitations using proxy-reported pain in patients with aHF.